« QFebruary 4, 2022. Today, I am 26 years old. It is also World Cancer Day. Mischievous coincidence, because since December 17, I have been fighting against “triple negative” breast cancer. » On Instagram that day, Lea Dousset comes out of the silence. Sitting on a window sill, she appears with her head bowed, fine blond hair veiling her face. A halo of light illuminates his hands folded on his chest.
The approach of this young woman is far from isolated. The hashtag #breastcancer alone brings together nearly 245,000 posts on Instagram, mostly from young women. The need to narrate one’s cancer is certainly not new. The forums and blogs that appeared in the 2000s were already exchange platforms for patients and their relatives. But with social networks, the subject has gained visibility.
For Aline Sarradon-Eck, anthropologist and clinical cancer specialist, this unveiling of intimacy responds to “a cathartic need”. Taking your cell phone into the hospital room and sharing a last photo before undergoing chemotherapy is a way to overcome loneliness, “to reconstruct one’s identity after the biographical rupture represented by the event of cancer”analyzes the researcher.
This quest for recognition on social networks can sometimes take a claiming turn, intended to shake up representations. “Invisibilized for a very long time, the patient’s diminished body tends to expose itself publicly, without shame. It restores self-esteem. according to Béatrice Jacques, health sociologist. From there to speak of liberation? Not so obvious, according to sociologist Philippe Bataille: “In the waiting rooms, we don’t talk to each other any more than before. The crossing remains very modest and relies first on the individual himself. »
Failing to be able to look at her reflection in the mirror – she says she no longer recognizes herself – Léa Dousset shares on social networks the stages of her illness, the progress of her treatments and the deleterious effects they produce. on his body. In a new post, on February 13, we can read: “Alopecia. My hair has been falling slowly but surely for several weeks. I followed the advice of a transitional short haircut, “to get used to”. But last night, I decided to shave my head. Seeing them and feeling them fall was becoming too painful. » Immediately, messages of support flow in the comments, but also on his private messaging.
Each reaction strengthens Léa Dousset in the conviction that her experience should be useful to others. For Philippe Bataille, this movement of affirmation of a “virtual us” makes it possible to “to find words in the other that you cannot put down yourself when you have the feeling of losing ground on your existence”. While the entourage plays normality and strives to project the suffering person towards a positive horizon of healing, the comfort provided by a community of peers is of a different nature. Above all, patients exchange their own knowledge on social networks, such as gestures to relieve pain.
Popularize for prevention purposes
Over the course of appointments with her oncologist and discussions with other sick women, Léa Dousset refines her knowledge of the enemy within. The young doctoral student in economics immersed herself in the scientific literature until she mastered the characteristics of “triple negative” cancer and its resistance to existing targeted treatments. Information that she hastens to popularize on the networks, for prevention purposes.
As her mastectomy approached last March, the young woman posed, a fuchsia blazer open on her chest. Under the photo immortalizing her breasts one last time, the comment of a friend of Léa: “I reminded my sisters, aunts and cousins to do their exams well. » A sign that his message on the need for early detection has gone well.
“The Instagram profile of women with breast cancer acts as a real-time narrative of her body journey,” summarizes the sociologist Béatrice Jacques. Not without perverse effects, however, because “The patient must look good, despite the loss of hair, nails and all the devastating effects of this disease”, she raises. Overwhelming injunction for those who do not have or no longer have the strength to put themselves on stage. The American poet Anne Boyer, herself stricken by cancer, does not say anything else in her book Those who don’t die. According to her, the silence of authors on the subject in the 1980s gave way to «din of a bewildering production of language around breast cancer (…)a noise that often obliterates ».
Extension in reality
Sometimes, social networks find their extension in reality. This June 10, 2022, Léa Dousset appears all smiles facing the camera, her eyelashes have almost disappeared, her eyebrows are sparse. The reason for her enthusiasm: she is about to join the Shaved Heads Gang, a group of women with breast cancer discovered on social networks, for a weekend in Bordeaux. With her “combat sisters”, they will march through the heart of the city, first wearing wigs and other scarves, then bareheaded. “It’s a way to reclaim their image, to feel beautiful, but also to raise public awareness of the risks of cancer in young women”, explains the gang’s co-founder, Caroline Bellegarde.
This moment of levity in no way erases the tragic outcome experienced by some women. And for the survivors, the question of “the afterlife” remains. “For months, you unite with the caregivers. When this bubble bursts, it deeply destabilizes people in remissionemphasizes Philippe Bataille. Social networks then become a way to keep a link beyond healing. »
A cancer that strikes young women
Triple-negative breast cancer (TNBC) is the least common subtype of breast cancer, but still accounts for 15% of cases diagnosed each year, or about 9,000 women.
The median age at diagnosis is 53, ten years earlier than for other breast cancers.
About 40% of patients with this particularly aggressive form of cancer are under 40 when diagnosed. The five-year survival rate is 20%.